Suffering in children: opinions from parents and health-care professionals

Abstract

Parents', physicians', and nurses' perceptions of suffering overlap but also show important differences. Differences found seem to be rooted in the relation to and kind of responsibility (parental/professional) for the child. The child's illness, suffering, and hospital admission cause suffering in parents. Health-care professionals in PICUs need to be aware of these phenomena.

Nurses’ Experiences in End-of-Life Care in the PICU: A Qualitative Systematic Review

“…In PICUs, the uncertainties entailed by death and the necessity to help the family make the complicated decision about do-not-resuscitate (DNR) orders in emergent situations may lead to moral predicaments for nurses. This finding is consistent with other studies on care experiences of NICU nurses (de Weerd, van Tol, Albers, Sauer, & Verkerk, 2015; Prentice, Gillam, Davis, & Janvier, 2017).…”

The new futility? The rhetoric and role of “suffering” in pediatric decision-making

“…Study after study has demonstrated that the experience of caring for very ill children causes significant distress and often suffering in parents and caregivers, especially bedside nurses who are often the primary witnesses of patient’s day-to-day experiences. 20 –24 Furthermore, the caregiver subjects of qualitative studies on perceptions of child suffering often spontaneously described their own suffering. Take the following quote as an example of parent suffering: And we, we suffer now.…”

“…Your family is now disrupted, they sleep at different places and times and sometimes you’re not always there mentally. 22…”

“…Your family is now disrupted, they sleep at different places and times and sometimes you're not always there mentally. 22 The research is clear: observing a child suffering often causes suffering in the observer. The root of parental dis-ease or suffering might be the parent's inability to protect their child or the disruption of their parental role or the unrelenting empathic work of watching your child in pain.…”

Please Do Whatever It Takes to End Our Daughter’s Suffering!

“…The sedation should be optimized, but adequate dosage could significantly vary with time. 8 A complete weaning from respiratory support should be considered if the neurologic evolution remains worrisome and the child is unable to breath independently. This support could be seen as an artificial way to prolong life and could be withdrawn after the parents agree.…”